It sounds like a pretty basic hemo appointment.

I'll just take issue with one thing she said ... whether your leg will get any better. You're not even a year out from diagnosis so in my mind, you have tons of time for improvement. I saw improvements in my leg up until two years out. It got much better in terms of discomfort and swelling both over that time.

I was only on the thinners for six months, but my leg continued to improve even past coming off them. I also have a chronic clot like yours (in fact it is still in my leg from 2005), but it doesn't bother me much at all any more. In fact, other than the leg being about an extra inch around than the other, I don't have issues with pain or discoloration or weakness.

In my mind, having a chronic clot means that the body has to develop blood pathways around it. That takes time and I don't think you'll see the full results at only nine months out or so. I guess what I'm saying is don't give up hope; there's no reason to assume that this is as good as it gets for you.

Sometimes we expect some big epiphany at these appointments with Hemas but they generally go just like this.

I agree with Toss that things could improve. Maybe your hema was just trying to give you realistic expectations but I do think there's hope for improvement. I have PTS and even that's not nearly as bad as it was when it was first diagnosed. I do have some bad days with my leg still but it's not constant, and frankly I have far more good days then bad.

I am angry with my GP right now. I asked to be referred to a Hematologists and she didn't want to refer me and thought maybe I should take my Lorazepam so my anxiety levels would go down. The nurse even asked me "why?" I would need to see one and I explained that I would like to know if I have any predispose blood issues. She still doesn't think the doctor will refer. What is their problem?

Sometimes they don't send you to one if you have a reasonable explanation for a clot. Does your doc have an idea of why you clotted? Furthemore, it may be a time waster to go to a hema at this point when you're on treatment because for some of the tests, they can't test you accurately if you're on an anticoagulant.

Also, your doctor can technically order the same tests that a hema would order.

Well why doesn't she offer to do that. They keep saying that it was birth control. But why am I sill left with not feeling good? I have told them that I think other things are going on since I have had this head pressure on my left side for a couple months now. They could at least be more sensitive about the issue instead of telling me I am going crazy.

I think because she's probably fairly certain it's BC related and she may not think it's necessary, plus it's expensive. When was your clot diagnosed?

Deep breath. It's going to be ok. Genetic testing is not an automatic. There are many people here who've not had it done.

They didn't really tell you that you were crazy did they?

She didn't directly come out and say "crazy", but did ask me if I was keeping up with my Lorazepam to control my anxiety. I was like "no" I can't take that stuff...it makes me feel s weird. And thought maybe I need a different medication. I said I didn't want anything else and I was tired of all the meds that keep shelling out to me. The thing is they did numerous blood tests, but nothing regarding genetic blood disorders. I feel like they took all of that blood just to run basic scans, which seemed like a complete waste of money since they did it 3 times! I'm taking a deep breathe now...LOL. These doctors are just frustrating and I feel like they get paid all this money and are not doing what you're asking.

I know it's frustrating. I will say this and it's only because I'm so removed from my original clot and can be a bit more objective about things at this stage, but anxiety is a real issue with this happening to us. And if you are prone to anxiety, it's gonna get amped up. So try not to take it real personal if she's offering to help you try something else. I think in a way she may be acknowledging how difficult a time it can be for you.

With that said, if you just started your anticoagulant treatment (I don't know when you started ) the genetic testing isn't even really relevant at this point. So why not just take it day by day. It's so much easier than getting aggravated over stuff you really have no control over right at this moment.

I'm not trying to diminish how you feel. Just saying it's so not worth getting upset over at this point, know what I mean?

It would be a lot easier if the doctors educated you more on what it was that they were doing. I felt like I was lead on....you have a blood clot...take this medicine and you will be fine. Well it's not that simple for everybody. I have anxiety sometimes and yes the clot created tons of more anxiety and confusion, but I'm dealing with that. I just wanted a little more empathy from my doctor to know that she really cares about the issue.

@cyndeeme

I can totally relate to what you're saying about wanting some empathy.

This was really one of the best things that happened to me about the third or fourth time I showed up in my doctor's office in tears and convinced that something else was going on. She told me that (1) she'd be shocked if I wasn't feeling anxious and overwhelmed and that (2) I could come in to see her every day for a while if it made me feel better.

I mean, I didn't need to go in every day, but her saying those two things basically told me that she totally got where I was coming from and she was willing to help me work through it. Really the simplest stuff for her to say, but I still think about her saying that and how much better (and more sane!) it made me feel.

I'm sorry your doc seems to be adding to your stress right now instead of helping. RMB is right that if you're early in treatment, there isn't much a hematologist can do for you since most tests can't be done while you're on warfarin. Also, since you do have a pretty clear cause for your clots, many docs hate to order expensive tests (the genetic ones) just out of curiosity. It is very common not to get genetic testing unless you clot a second time.

If your real concern is that you've got other symptoms (like that head pressure) then make an appointment just to talk about that and don't go in assuming it is connected to the clots somehow. Lots of us have had other things pop up that may or may not have been connected to the clots ... but you kind of have to work through them separately.

Hang in there! It sounds like the anxiety is really getting to you at this point, especially since you feel like you don't have much control over it all at this point. I hope you've got a plan for tackling the anxiety that doesn't include Lorazepan?

Thank you TossNTurn. I have been through so much in the last 2 months. It was like a storm of events..went to the emergency room 3 times because of dizziness and feeling like I was having a stroke, have been diagnosed with Vertigo, Gastritis, anxiety and DVT all around the same time. With all that going on I just needed my doctor to make me feel like I wasn't a burden. I know I have to take it slowly and take things one day at time.

It took many years before my leg felt better and even now I sometimes get a twinge in the back of my knee in the location of the old clot.

Really ? As sad as that was for you I am happy to hear I still have some hope! I thought I would be okay - I never had a whole lot of pain period except for a couple of weeks and now I have so much ache and burning I feel like crying.

I was still nearly as miserable at 6 months as I was when I first clotted. Definitely don't give up hope. Like they said, you can continue to improve for up to 2 years. That first year was definitely the hardest. You have to think, your body is having to rebuild itself. It's going to take time, and it's not going to be pain-free. But it can still get better.